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It could be worse.

For those of you who know me, you may have known that this past year I haven’t felt well. If you do know me, and didn’t know this – it’s probably because I didn’t tell many people. In fact, for the first weeks/months of having symptoms I kind of ignored it myself. Maybe I was in denial, I don’t know. I do know however, that one day I decided that seeing that much blood in the toilet couldn’t possibly be a good thing. I broke down, and told a friend. To that friend, you know who you are, thank you for advising me to go to the doctor. In May of 2013 I was diagnosed with a “severe” anal fissure. A fissure is basically a tear to the rectum which can cause bleeding and discomfort when passing a bowel movement. While I never experienced the latter, there was always blood. I was prescribed light stool softeners, a cream, and told to take Mira-lax (powder-lax). The powder-lax made me feel nauseous (even more than usual) and didn’t seem to make any difference so I didn’t take them for long. I don’t think I ever saw much change in my symptoms, but I told myself that since my doctor said it was a severe fissure, it was just taking a longer time to heal than expected. After all, I do weight-lift so I figured perhaps I wasn’t giving it time to heal properly. The months went by and the symptoms were pretty much the same. I often had diarrhea, or more so the urgency to go but after rushing to the bathroom realizing it was a false alarm (or just blood/mucus). After struggling with that for several months, I then battled with the exact opposite problem – constipation. Believe it or not I’ve actually been asked which I prefer. Unfortunately I don’t remember what my response but I hope it was a very sarcastic and witty retort. Coincidentally my symptoms got worse when I went to Australia for three months – where I had no health insurance. I realized how lethargic I felt on a daily basis, the stomach pains and cramps, and the irregular “movements.”

Being the type of person I am, I started to research into it. I read about Crohn’s Disease, Ulcerative Colitis, Internal and External Hemorrhoids, Diverticulitis, Anemia: you name it – I probably read about it. It may sound odd, but I think I knew I had UC. I actually told a few people that I was nearly positive that’s what I had, and sent them some links to read up on it. After talking to my mother (and severely freaking her out), I started to try to convince her and myself that it was just hemorrhoids. Hemorrhoids are easily treated and they’ll go away. Out of all the options hemorrhoids would be the easiest to fix — so I actually began to WANT hemorrhoids. But deep down, I never felt as though that’s what it was. Once I returned home it was time for my office visit at the digestive specialist. While the Physician’s Assistant (PA) was very kind, and listened to everything I had to say – the doctor was the complete opposite. I could tell that he didn’t read the information his PA wrote down, and he didn’t seem to take me seriously. He tried to just schedule me for a flexible sigmoidoscopy, but due to the extensive research I’ve done, I knew to stick up for myself and demand a colonoscopy.

For the colonoscopy I was put under general anesthetics. I remember lying on the table and being injected through my IV. I was about to ask how long it would take to knock me out… but it was too late. The next thing I knew I was waking up with a nurse standing over me. My doctor came over with some pictures of my colon in his had. That’s when he delivered the news. Though it’s all a bit fuzzy due to the medicine, I clearly remember him saying “You have colitis.” I immediately began to cry because I knew exactly what that meant. Chronic. Disease. Incurable. All of those words flashed through my mind. Through the tears I started spitting off information. “Oh yes, I’ve read about this. I know a lot of people treat their UC through a Paleo diet..” Word vomit. I had word vomit. I felt as though I was just slapped in the face but all I could do was spit off random facts I knew about UC. I think I may have been trying to convince my doctor, my mom, my nurses and myself that I knew what UC was, and that it was something I could handle. The doctor must’ve looked terrified because I heard him saying, “She will live a long and healthy life.” He said that he was prescribing me medication which I would have to take the rest of my life. After that the doctor was gone. If he did explain what kind of medicine he prescribed – I don’t remember due to being under anesthetics. He didn’t tell me (or my mother) much about UC at all; he just left. Though at times I regretted all of the hours I spent obsessively reading article after article trying to find answers – I’m now extremely thankful. If I hadn’t, then when he told me I had UC I would’ve been extremely confused. I would’ve had to obsessively read all of the articles I read months ago, the hours and days following my official diagnosis. The research I did made me knowledgeable, which made me strong. I needed to be strong for my mothers sake. I needed to be strong for my own sake.

Though I was prepared to hear the news, it is taking some time to get accustomed to. When you’re 21 years old you don’t think of getting diagnosed with a chronic disease. You think that happens when you’re 60 or older and not a day sooner. The words disease, chronic, illness, and disorder are all words that should stay in a text book, in a news article – not something that the doctor diagnoses you with. I like to think that I’m taking all of this very well. I’m embracing it the best I can, learning more and more each day and will continue to do so. I am welcoming the lifestyle and diet changes.

While I’m doing the best I can do embrace this with a positive outlook not only for the people around me, but also for myself.. I’m doing just that – the best I can. Have you noticed that when something bad happens, everyone goes to the “It could be worse,” saying? We are all guilty of saying it and if you’re sitting there thinking to yourself, “I don’t say that.” then you’re lying. End of discussion. We say it as a means of coming to terms with a hardship, a way to make ourself feel able to cope with the situation. While I do think that it’s a good thing to keep in mind, as most things can always be worse, I also think that saying can cause pain. When that’s one of the main things you hear for literally days, it can start to feel as though your problem isn’t one of any significance. You may start to feel as though it doesn’t matter at all. You may even feel that you’re just being a drama queen and just need to get over it. Saying “it could be worse” is a way of sweeping the situation at hand under a rug (which needless to be said – doesn’t feel good). What do you think you’re accomplishing when you say that? Do you think that said person hasn’t realized that it could be worse? Let me let you – they have. Just because something could be worse doesn’t change the current situation you, or another person is going through. As I’ve said, I think it’s a great reminder to have – however it doesn’t make what’s going on any better, it doesn’t make it fun, pleasant, or enjoyable. Hearing “It could be worse,” isn’t going to make someone (or yourself) all of a sudden feel happy. Hearing this repetitively this past week has made me want to scream.. even at the ones I love most. I’ve wanted to scream, “I KNOW THAT IT VERY WELL COULD, BUT YOU KNOW WHAT? THIS SUCKS!” Why? Because it does. It could be worse. I KNOW it could be worse. I’m THANKFUL it’s not worse… but I’m not happy to have this disease. My point is that when you or someone around you gets bad news; grieving time is deserved. That person more than likely needs some time to come to terms and accept the situation at hand.

As part of my recovery – rather than just blindly accepting the drugs the doctor prescribed and that being the end of it – tomorrow I’m embarking on a new diet. I will be eliminating foods that may be causing some of the inflammation in my large intestine. It will be for a minimum of 30 days, but up to 3 months. After that time period I will slowly start to reintroduce foods to see how my body responds to them. If it shows that I can’t digest them easily or that my body just doesn’t respond well to them, they will potentially be off limits for life, and vice versus. I’ve been planning on doing the Whole30 for the month of April since January, however now given the circumstances I will be doing the AIP (Autoimmune Protocol) on top of it. I actually just got the book, The Paleo Approach, by Dr. Sarah Ballantyne today in the mail today – and can’t wait to start reading it. I’ve been reading so much lately, and unfortunately every information I stumble upon completely contradicts the article I read before. I’m still trying to sort everything out – there’s still so much I’ve yet to learn about UC, and the natural ways to heal my gut. I’m purposefully not going to go into much detail in this as I want to be more knowledgeable and form my own personal opinion before I elaborate. I’m going to do my best to frequently post updates (as much as I can) so I can let others know of my progress (or lack of), and maybe help others with similar problems along the way. I’m determined to not get discouraged by this.. I will control this disease, not the other way around.

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One thought on “It could be worse.”

Very well written Casey, and I know you well enough to know you will take this all in your stride and come out the other side smiling I am very proud of how you have coped with this difficult and uncomfortable situation, and like everything in your life I know you are going to be successful in finding a solution.
Perseverance is so important, as we both know!
Also very valuable advice about the “it could be worse” statement that is randomly thrown around. Xoxo